Hormone therapy

windgirl
windgirl Member Posts: 340
edited January 2021 in HER2+ (Positive) Breast Cancer

Hi, I’m tripple positive and am so upset that there is no information on how recurrence risk is affected by hormonal therapy (and length) for this type of tumor. How is it that there is no studies that have looked at this? What am I missing? how do you all deal with the lack of information in trying to make important decisions

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2020

    Hi windgirl!

    Why don't you use this tool?

    https://breast.predict.nhs.uk/

    Remember that it's asking you for tumor size in millimeters, so for you that would be 30. You received 3rd generation chemo, and Herceptin (trastuzumab), so be sure to enter that.

    When I enter my information, and I select Chart, it says:

    "All of the below plus trastuzumab brings survival to 89% at 5 years.

    All of the below plus chemotherapy brings survival to 85% at 5 years.

    Hormone therapy brings survival to 78% at 5 years.

    Surgery only survival is 70% at 5 years"

    So, hormone therapy increased my survival rate by 8%.

    Hope this helps!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    windgirl - as HER2+ you will most likely have chemo before anything else. That seems to be the protocol since it's so fast moving & most MOs seem to focus on that first. There are really lots of threads on here that discuss triple positive, maybe not just stated that way. If I remember correctly ER/PR positive is the most prevalent type of BC, so it you start reading HER2+ threads I think you'll find a good response.

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  • windgirl
    windgirl Member Posts: 340
    edited September 2020

    Thank you Elaine! That link seems very helpful. What I am struggling with is recurrence risk and how it’s affected by hormone therapy for us tripple positives. HT is recommended for 10 years because of the Atlas study, which did not separate between her2 status so the benefit of extending HT for tripple positives is not for certain. I am at the 5 year mark and cannot find any meaningful studies that show this for tripple positives

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  • windgirl
    windgirl Member Posts: 340
    edited September 2020

    Minustwo thanks so much, yes I got chemo surgery and radiation and have been on Tamoxifen for 5.5 years. I am trying to find information that would support me to extend this to 10 years or not, but cannot find anything. My doctor doesn’t know of any either as the key studies on this topic did not pay attention to her2 status.

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2020

    I'm an old-timer around here. I remember years ago digging into Tamoxifen studies and wondering why none broke out HER2- versus HER2+. The reason? Because most Tamoxifen studies were started between the mid '80s to mid '90s when the significance of HER2 was not really well understood. Only approx. 20% of invasive breast cancer cases are HER2+ so to include a separate and equal HER2+ arm in any Tamoxifen study, the sample size (i.e. number of participants) would have needed to be increased, which in turn would increase the cost of the study.

    Every researcher has to choose which variables they will break out as separate study arms - HER2 just didn't make the cut back 30 years ago. Clearly a mistake, in hindsight, but they didn't know at the time.

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  • Eyesofblue
    Eyesofblue Member Posts: 4
    edited January 2021

    Hello Breast Cancer Survivors!

    I am new to the site. I am a 50 year-old who was diagnosed with stage 1B Invasive Ductal Carcinoma, hormone+/HER2- in March 2020. I underwent a double mastectomy and completed 3rd gen chemo regimen on December 10th. I am now looking at the suggested hormone therapy - Tamoxifen - recommended by my oncologist. I am experiencing significant joint pain post-chemo, which is a side effect of Tamoxifen, among others that are much more serious. I am interested to hear from those who have undergone this regimen of treatment - pros and cons, is it worth it? I am also looking at alternatives such as ovary removal. Any input I can get would be most appreciated.

    I have struggled more post-chemo, mentally and physically, than during and would love to find some support.

    After I get this figured out, I need to look at reconstruction. One step at a time ...

    Thank you and my best to all of you!

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  • Eyesofblue
    Eyesofblue Member Posts: 4
    edited January 2021

    Hello Breast Cancer Survivors!

    I am new to the site. I am a 50 year-old who was diagnosed with stage 1B Invasive Ductal Carcinoma, hormone+/HER2- in March 2020. I underwent a double mastectomy and completed 3rd gen chemo regimen on December 10th. I am now looking at the suggested hormone therapy - Tamoxifen - recommended by my oncologist. I am experiencing significant joint pain post-chemo, which is a side effect of Tamoxifen, among others that are much more serious. I am interested to hear from those who have undergone this regimen of treatment - pros and cons, is it worth it? I am also looking at alternatives such as ovary removal. Any input I can get would be most appreciated.

    I have struggled more post-chemo, mentally and physically, than during and would love to find some support.

    After I get this figured out, I need to look at reconstruction. One step at a time ...

    Thank you and my best to all of you!

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2021

    Dear Eyesofblue,

    Welcome to the BCO community. We are sorry for your cancer and its treatment issues and glad that you reached out to our members for support and information. You have come to the right place to meet with those who share similar experiences and who are readily available to support you along your course, whatever you decide that to be. We are going to suggest to you that you may want to move your initial post over to another thread. This particular topic is for Her 2 positive breast cancer and it looks like as you describe it that you are Her 2 negative. Check out the Hormonal Therapy Forum and perhaps in particular the Bottle of Tamoxifen topic which is very active. We think you might find more feedback there. Let us know if you need help with any of this. We are here to help you get connected as you make your way around the boards.

    The Mods


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  • Eyesofblue
    Eyesofblue Member Posts: 4
    edited January 2021

    Thank you! I don't know how to move it, but I will definitely put my post over there. I'm still foggy from chemo! I appreciate your warm welcome and wish you all a happy 2021!

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2021

    Hi Eyesofblue,

    I'm sorry you're still suffering from the chemo and that you have to be dealing with this.

    There's a bunch of threads here about tamoxifen. Most of them are about women struggling with side effects, which can be misleading. My impression is that there is at least 1/3 to 1/2 of women who do not have serious side effects from tamoxifen - maybe they have some initial side effects that go away, or that they can easily treat (or that are solved by taking a different brand or adjusting the timing of the doses). I have seen women describe it as a sugar pill.

    On the other hand, there seems to also be about 1/3 to 1/2 of women who have side effects that are somewhere from difficult to intolerable. (I was one of them). The side effects vary a lot also. For me joint pain wasn't even remotely an issue. And the only way to know is to try. I think of it kind of like the birth control pill, where different women's bodies respond to different drugs in different ways and you just have to keep trying till you get one that works.

    The good news is that there are a lot of hormonal treatment options to try before giving up (including different brands of generics). If you are premenopausal and not looking to shut down ovaries, tamoxifen is the main one talked about, but when that didn't work for me, I was able to get toremifene instead. If you are willing/recommended to shut down ovaries, there are three different AI drugs that can be tried.

    That said, even for many women who end up tolerating tamoxifen with no problem, there may be side effects starting out. I don't regret trying tamoxifen - my only regret was that I started it at the same time as radiation, so I blamed issues on radiation that turned out to be the tamoxifen. It is definitely worth speaking with your doctor about whether it makes sense for you to get more recovered from chemo issues before adding a new drug to the mix.

    Good luck!!

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